Friday, October 31, 2008

A NEW APPROACH TO LOVE

I love books that make you see the world differently, that change your perspective so much you can’t go back to seeing things the way you did before. Some books that have changed my thoughts and actions are When Things Fall Apart by Pema Chodron, Your Money or Your Life by Joe Dominguez and Vicki Robinson, Spontaneous Healing by Andrew Weil, and of course Michael Pollan’s Omnivore’s Dilemma.

Amy Sutherland’s small book What Shamu Taught Me About Life, Love and Marriage (Random House, 2008) can stand proudly in this category. I tore through it two days, thinking all the while, “I want to try this!”

The premise is simple. While writing her previous book, Kicked, Bitten and Scratched, Sutherland acquired a thorough knowledge of cutting edge animal training techniques, and couldn’t help thinking, ‘would this work on my husband?’

Before you laugh, consider that people are animals, too, and that these are not the old fashioned techniques of choke collars on dogs and whips for subduing lions. In fact, I would love it if everyone I know read this book and decided to use these techniques on me. The approach that Sutherland nicknamed Shamu and describes in her books is far more forward-thinking than many of the ways people interact with each other, especially in intimate relationships such as parent-child, siblings, and romantic partnerships.

To simplify, the Shamu approach is to focus on positive feedback and to avoid negative or punishing feedback as much as possible, even completely. The first part is easy: if your partner does something you like, let him know. Thank him, and do it as close to the time of the action as possible. The second part, avoiding negative feedback, is harder, but it is worth it.

I already had a taste of how effective these ideas can be before I read the book. Several months ago I saw an article promoting What Shamu Taught Me About Life, Love and Marriage. I put the book on hold at the library, and in the intervening months I used the ideas briefly outlined in the article as best I could.


A CURE FOR NAGGING

I tried the Shamu approach with the housekeeping situation. At the time, I felt I did more than my fair share of housework. I nagged The Poet to no end and to no avail. I also tried explaining my feelings of frustration to him, and that got us into fights. Then I tried pointing out the political implications of letting your girlfriend clean up after you, and that lead to more fights.

And then I tried Shamu. I stopped nagging and I started thanking. I thanked him for whatever he did, however small. The fighting about the house keeping went away, and now The Poet pitches in cheerfully, albeit erratically, with housework.

I haven’t transformed him into Mr. Clean, and there are still a few squabbles about dirty dishes from time to time (I usually slip off the Shamu wagon when I’m upset about something else—it’s so easy to transfer your emotions to the kitchen sink), but along the way something happened that was more important than turning The Poet into an anal retentive house cleaner. I learned to focus on what he was doing instead of focusing on what he wasn’t. As I thanked him, I truly became appreciative.

And that is the beauty of the Shamu method—the training trains the trainer.


A CURE FOR FIGHTING?

OK, but what about more difficult situations? The Poet and I fight—I mean really fight: arguments worthy of daytime TV. In fact, I’m not sure they would even put us on daytime TV, we’re so over the top. Neither one of us likes it, and we have tried everything we can to stop, but the fights just keep happening. The Poet has a short temper, and the Lyme disease makes me easily upset—OK, to be more honest, prone to hysteria. There are times when I’m so exhausted that I lose all perspective and at that moment tears and fury are apt to take over at the slightest provocation.

This brings us to the second component of Shamu: avoiding negative feedback.

This goes against the grain. It’s instinctual to shout back, or to even say “stop it!” when your feelings are hurt. It is second nature to try to get through to the other person by showing how unreasonable they are, or how much they upset you, and to try harder when you feel they aren’t listening—even if that means shouting louder, or expressing your feelings more vehemently.

It also gets you nowhere. Interactions feed on each other, whether they are positive or negative.

I know from enough out of control fights that upping the ante only gets more shouting and anger. Even when I use the therapist recommended technique of saying “Hey, let’s calm down now and take a time out,” he often keeps raging, throwing one more insult at me before he stalks off.

Sutherland’s alternative to this pattern is the LRS, or Least Reinforcing Scenario. This is how she defines it:

When a trainer, faced with an animal offering an incorrect response to a cue, does not respond at all for a few beats so as not to encourage that behavior. A neutral way of telling an animal “Wrong.”

In her own marriage, Sutherland tried avoiding any interaction, even eye contact, while her husband fumed about losing his keys. Instead of the long tantrums he had thrown in the past, this time, deprived of the attention he usually got from his wife, he quickly calmed down and set about finding his keys.

That’s all well and good, but the fights The Poet and I have are a little trickier than this. How do I apply Shamu when I’m faced with a raging Egyptian poet, twice my size and mad at me, not mad at losing his keys? I didn’t have a sure answer, but I was so enthralled with the book that I decided I would try anyway.

All the other couples advice books I’ve read (OK, they were only two, but they were by the guru John Gottman) said to make sure your partner feels you are listening to him by maintaining eye contact and giving lots of verbal and visual cues to show you are listening. Turning your back or shutting the other person out is considered stonewalling and will only make him angrier.

Lots of eye contact and verbal feedback is the very opposite of the LRS, so I decided to strike a balance. As long as The Poet was trying to get a point across to me, I would engage with him, even if he raised his voice. As soon as he slipped into merely throwing out insults, or threatening to break up with me (his favorite way to get me upset, and also my favorite way to get upset), I would try the LRS.

For the LRS I wouldn’t turn my back, but just shift my gaze away from him and let my expression go blank. I wouldn’t say a thing.



A FIRST ATTEMPT

I wasn’t hoping for it, but Saturday morning was my first opportunity. This is a time when The Poet and I often get into fights. I have been mostly by myself all week, and I am excited he is home. He, on the other hand, has been working and socializing all week and is ready to be alone. We clash, and he is often at his most volatile because (guess what) he really does need to be alone.

Early that morning he said he was going out and he would be back at 5pm. I was disappointed, but then I realized he must need time to himself, and there was no point trying to persuade him to spend more time with me.

I said, “OK,” but my temporary disappointment must have flitted across my face, and he noticed it.

“You know what, I don’t need this! I don’t need you pouting and making me feel guilty when I want to spend time alone!” he moaned.

I assured him that I wasn’t trying to make him feel guilty. I wanted him to go, besides, I would probably be napping or writing most of the day.

But it was too late. He had started the day in a touchy mood, and once he was upset the argument was unavoidable. Soon enough he shouted, “If it’s going to be this way, I’d rather not have a girlfriend!”

I put the LRS into action, moving my gaze away from him and remembering that I shouldn’t say anything.

And a strange thing happened: instead of feeling like I was choking back my emotions, I felt freed from having to respond. I relaxed. And once I relaxed, I had time to think! I remembered that The Poet had shouted this at me thousands of times before, and had always told me later, long after the fight ended and he was calm again, that he didn’t mean it, he was had just said it because he was angry.

That kept me cool. Different replies did come to mind, the types of things I would usually shout back at him. But since I had taken the pressure off myself to say something, I considered these replies from all angles and realized that they were the kind of things that just made the argument worse. Keeping silent was better.

Eventually The Poet broke the silence. He was still arguing, but his responses were back to addressing the reasons for our conflict, and not just shouting insults. He threatened to break up several more times in the next twenty minutes, but I whipped out the old LRS. It quieted him down, it quieted me down. The argument was a little less heated than usual, and I wasn’t nearly as upset.

And then a strange thing happened. He threatened the break up one more time. I LRSed. There was silence. And then he said, and I quote: “You know I don’t mean that, sweetie. I don’t want to break up with you. I just said it because I’m mad right now, but I really don’t want to break up with you at all.”

Yes, he’s taken it back before, but not in the middle of an argument, not just a moment after making the threat. That was a first.

I called it a success. He went off to have Poet time, and I went for my morning nap.

It was an auspicious start. It wasn’t a miracle, but it cut the element of escalation from the argument, and had an overall effect of slowing and calming down our interactions by perhaps 30%.

Over time, who knows. I will update you on what happens.

Wednesday, October 29, 2008

DIAGNOSIS, CONTINUED

Continued from the previous post

It is strange that out of the whole complexity of Dr. X’s diagnosis, the part I chose to dismiss was the very crux of my illness. Perhaps at a subconscious level I was protecting myself from the truth, because I certainly wasn’t ready to treat the Lyme with antibiotics. When standing up is difficult, it’s not the best time to bombard your body with killer pharmaceuticals.

As long as I was getting better, I had no reason to think any more about Lyme than necessary. My current treatment was working. I wasn’t all the way there yet, but progress would continue. Full health was just around the corner.

Ten months after I started heparin, full health was still around the corner. I had left Dr. X, and Carolyn Humphreys, my naturopath, sent me to see Dr. Martin Ross.

Dr. Ross gave me the gift I no longer knew I needed: a diagnosis.

If I’m going to continue with the parable of the blind men and the elephants, then Dr. Ross was—to put it plainly—not blind. He knew about elephants, and so could recognize the parts as pieces of the whole. Fatigue, insomnia, low adrenal function, compromised immune system, chemical sensitivity: it was all part of Lyme disease. The illness attacks every system in the body, and my symptoms, it turned out, where not a diverse array of “getting run down.” They were Lyme disease.

“The treatment,” Dr. Ross told me more than once, “takes two to three years.”

I called the Poet as I left my appointment, and ended up meeting him at the organic co-op across the street from his office. We walked through the aisles and then up and down on the sidewalk outside as I told him what Dr. Ross had said.

“Two years?” he asked.

“Or three, probably three since I’ve been sick for so long.”

We were both trying to get our heads around it. For the past year, my recovery was always a few good months away. Now that hope was gone.

Writing this a year and a half later, I can say that Dr. Ross’s diagnosis was the best thing that has happened to me in the past ten years. But at the time it felt like we were being robbed of a dream that had been almost within our reach.

Having the poet beside me was a comfort. We paced the sidewalk, talking about the treatment options Dr. Ross had described. Soon he turned to me: “I have to go back to work, sweetie, but this is a good thing. I think so.”

Gradually over the rest of the afternoon, it sunk in. I had Lyme disease. My complete recovery had never been just around the corner, even if Dr. X had told me that heparin and supplements were all I needed and that the end was in sight.

It explained so many things: the crippling illness, for starters, and why I had made so little progress after the initial change when I went on heparin. What was more, it felt good to know exactly what I was fighting.

Since 1999 my body had been a dark mystery. Even as I’d made progress with Dr. X, the illness had been framed as problems with my body: my adrenals, my immune system, my digestive system, all had strangely ceased to function as they should. And when I say my body, how can I separate that from myself? My existence had been weakness and suffering; it had felt alien and yet was inseparable from who I had become. Being able, for the first time, to picture the malevolent bacteria that had colonized my body changed that. The Lyme was the Lyme and my body was my body. They were occupying the same space, but were, at last, two separate entities.

Dr. Ross had told me that 90 percent of Lyme patients get better with the right treatment. As the Poet had told me outside the co-op: “of course you’re in that 90 percent. I don’t know anyone better at staying organized and taking all your medicine at the right time.”

I looked over the lab write-ups Dr. Ross had given me, and the prescription for an anti-fungal medicine, to start now, before I started Lyme medications. I also needed to make an appointment with Dr. Tara Nelson, who herself had recovered from Lyme, so I could get her advice about what course of treatment I should chose.

Keeping on top of doctors’ appointments and labs and medication for this illness is time consuming. I had long ago learned not to get discouraged by thinking of it all as a just job—a job I didn’t apply for, but was handed to me nonetheless. It was time to start taking care of business.

Wednesday, October 22, 2008

DIAGNOSIS

For five years I longed for nothing more than I longed for a diagnosis. To be cripplingly sick and not know what is wrong with you is terrible. First of all, there is no means of getting better. Second, there is no simple way to tell others what is wrong with you.

The first, it goes without saying, was bad, but the second could at times feel worse. Without a specific name for my illness people tended to doubt I was sick at all.

It’s one thing to have to stop working, stop writing, ache all over and be so exhausted it was often practical to crawl to the bathroom instead of walking. It was even worse to have my father not understand I was really sick, to have my boyfriend wonder out loud if my problems were psychological, and have one of my oldest friends call me up to tell me my real problem was depression.

If I had to be incurably ill, couldn’t the universe at least give me the dignity of a name that would make people believe it?

Not having a diagnosis did not mean I stood in front of a group of doctors wearing white coats and scratching their heads as they told me “we’re sorry, we just don’t know what’s wrong with you.” Instead I heard explanations as varied as cytomegalovirus, food allergies, weak adrenal glands, chemical poisoning, mycoplasma and the fabulous catch-all, chronic fatigue syndrome.

Looking back, this was like the parable of the blind men touching the elephant. Each explanation was blind contact with a part of the elephant. No one saw the entire beast, which was, of course, Lyme disease.

With each new explanation I believed I had found the answer, and would be better soon. I learned, however, that the proof of a diagnosis is in the treatment that follows. I could believe all I wanted that food allergies were the root of my problems, but when treating them didn’t make the fatigue go away, and when the food allergies themselves came back soon after the treatment, I lost faith in that explanation.

Over five years I went through as string of such disappointments. Meanwhile my health slowly grew worse, I could walk shorter and shorter distances and went through greater downturns as treatments backfired.

In the end, we adjust our psyches to our realities. I grew to mistrust the seductive explanations about what was wrong with me. I would only believe the doctor who actually made me better. When I finally made it to Dr. X, I didn’t care too much about her diagnosis. I cared whether she could cure me.

Dr. X’s diagnosis was more like a list than a single diagnosis. It included most everything I’d heard before, and some I hadn’t. Lyme disease was thrown in there, but it was just one in a jumble of ailments, so I didn’t pay it too much attention.

For two years, I undertook a dizzying amount of treatment: orthodics, reiki, vitamins, supplements, lymph drainage massage, far infra red sauna and cranial sacral therapy. When I got the orthodics, my legs stopped aching when I stood up. When I started taking amino acid powder, I began to sleep better. When took medicine to kill off the colony of round worms in my intestines, my energy climbed another notch. Once I began heparin injections, I could walk again. The distances were still limited, but I no longer had to drive one block to the grocery store.

Meanwhile, I latched onto Lyme disease as the most succinct, recognizable label for my illness. I told everyone I met that I had Lyme disease. It was a relief to have people nod in instant understanding: I was truly sick, not crazy or lazy.

But in my heart I found the other explanations more credible. I had first gotten sick in Mexico, starting with a urinary tract infection that led to an endless array of antibiotics as the infection resisted the medicine. Meanwhile, I had picked up and treated one parasite after another. The low adrenal function explained my exhaustion, as for the food allergies and the sensitivity to chemicals, I could tell for myself I had those things.

I knew, vaguely, that treating Lyme disease involved massive doses of antibiotics. I had a huge fear of antibiotics since the antibiotics I had taken for a urinary tract infection in 1998 had set off all my health problems. I certainly didn’t want to take any more. Besides, that tick bite happened a full year after my health started to deteriorate, so I just saw it as the smallest, least important part of the whole picture.

(If this all sounds confusing, it is. To this day, I don’t fully understand the biological chain of events that got me where I am.)

To be continued...

DYING IN THE MIDDLE OF THE NIGHT

Ghusun left at 10:30 Saturday night. The Poet had made his signature dish—roasted whole trout. I had made a cobbler with blackberries I picked from the vines lining our sidewalk. We had all eaten well, the movie was over and the house was quiet, but my head was still buzzing from too much TV, so I went for a walk—up and down the hills of Fremont, towards the bars, where there were lights and people to make me feel safe.

Back home again, I whizzed through my bedtime routine—chlorella powder mixed with water and electrolytes, the handful of pills from the days-of-the-week pill box marked N, then the immune booster I let dissolve under my tongue after pulling the capsule apart and measuring out half a dose. I brushed my teeth, took my vitamin C and salt. By then the Poet was asleep. I wasn’t sleepy, so I read in the living room until I felt tired, then slipped into bed.

Within a few minutes I was asleep, and in a few minutes more I was awake again. This is always a sure sign I had forgotten a supplement. I took a Heart Gems capsule (vitamin B), then drank down more Vitamin C & salt. I still couldn’t sleep.

Doh! I hadn’t done my Bicillin injection—the antibiotic injection I do three nights a week before going to sleep. I got out of bed, wishing my body weren’t so sensitive to these things. Couldn’t I just forget, just once, and still get a good night’s sleep? It wasn’t the end of the world. But even when my mind forgets, my body doesn’t. This wasn’t the first time I couldn’t sleep because I had inadvertently skipped a dose of medication.

When I went into the kitchen the clock read 1:30. I got the antibiotic-filled syringe out of the refrigerator and read a Willa Cather essay as I iced the spot for the injection, i.e. the side of my butt.

The hardest part about the injection is first thrust of the needle. I’m supposed to hold the syringe as if it were a dart, and insert the needle with a quick throwing motion. Only it’s hard to do that on myself. I hold the syringe and do the motion, but I inadvertently pull up in the last instant, so the needle just barely breaks my skin—and this of course makes it hurt ten times more than if it went in quickly.


That done, I have to push the 1½ inch needle down into my flesh, then pull the plunger up a few millimeters to check if I’ve hit a vein. If blood flows back into the syringe, then I’ve hit a vein. I have never had this happen. From there, I start to push the plunger down. This I do very slowly, to avoid it hurting. Some nights it hurts anyway, some nights it doesn’t hurt at all.

Tonight it wasn’t hurting if I kept the needle about 1/8 of an inch short of its full insertion. I figured there was some nerve down there that I was brushing against, so I kept back from it.

When I pulled the needle out, a small stream of blood flowed quickly down the side of my hip. I had never seen so much blood after an injection.

I grabbed for a cotton ball, mopped up the red liquid and pressed on the spot of the injection. “Please let this stop,” I begged the powers that be.

I switched the cotton ball for the ice pack, pressing to the spot while I read a little more to distract myself. Willa Cather had met Flaubert’s neice while she was vacationing in France (I wasn’t really sure that I cared). A couple minutes later I pulled the pack away and saw that blood had soaked a thick oval across the Kleenex I used to line the cold pack. Now I was scared.

In retrospect, it wasn’t so much blood, but when you’re up alone, pushing needles into yourself in the middle of the night, it’s hard to keep things in perspective.

To add to that, several weeks ago I had read the warning label on the package. “Not for intravenous use,” it read, and went on to explain that if it was used inadvertently in an IV, you could die. Was hitting a vein without knowing it an “inadvertent intravenous use?”

Had I hit a vein? I had pulled the plunger up once the needle was in, but now I didn’t remember checking at the base of the syringe for the red spot of blood.

The bleeding wasn’t stopping.


“M., help me!” I called out. The Poet was in the other room, and asleep, so it wasn’t surprising he didn’t hear. With some reluctance, I opened the bedroom door. “M. I’m scared!” I called out to him.

“What is it?” he said, rolling towards me under the jumble of quilts and blankets on his bed.

“I just did my injection and it won’t stop bleeding, and it’s never happened to me before.”

“Come here,” he said. I sat down on his bed. “Just press on it until it stops bleeding.”

“OK,” I said. “I’ll got get another cotton ball.” Once I was back he put his arm around me while I sat next to him, pressing.

“M.,” I said. “I’m scared I hit a vein.”

“Is it bad when you hit a vein?”

“I think so. It might be really bad.”

“OK, then get to sleep soon and we’ll call Dr. Ross in the morning.”

“But I think I might die in the middle of the night!” I blurted out.

He laughed his big rumbly laugh.

“Then go lie down in your own bed. I don’t want to wake up in the morning with a dead body next to me.”

I laughed too, but against my will. The part of me that was laughing and the part of me that was scared were duking it out.

“If I do die, you’ll be sorry you were so mean to me!” I shot back.

“You won’t die! Zey wouldn’t give you zis injection to do at home if you could kill yourself,” he said dismissively.

OK, he had a point, but I wasn’t giving up so easily.

“If I die, will you tell my parents I loved them?”

“Alright. Anything else?”

“Nope, that’s all.”

“I don’t want to die right now!” I howled a minute later. “I don’t want to die now, while I’m still sick and before I’ve done anything with my life!”

“You won’t die.”

“I might.”

“OK, I’ll bet you fifty dollars you won’t. If you’re right, I’ll give you fifty dollars---”

“Why would I do that? If I wake up tomorrow and I’m alive I’ll have to pay you fifty dollars, and if I’m dead you’ll pay me fifty dollars?”

“Yeah! I’ll bet you!”

I checked to see if the bleeding had stopped.

“Is it better?” he asked. It was. I went to put on a band aid. I was still a little miffed that he hadn’t taken me seriously. I had been scared, I wanted to be comforted.

“Do you think I could be bleeding internally?” I asked when I got back to the bedroom. Then, “Can I lie down next to you?”

“No, I want you to die in your own bed.”

“OK, you’re right. You need to get a good night’s sleep because if you wake up with a dead body in the other bed you’ll have a lot of stuff to do tomorrow.”

I gave him a kiss and went to the living room. I wasn’t that worried anymore, but I was still wide awake. I lay on the couch and did my relaxation technique.

Twenty minutes later I heard the Poet calling. He doesn’t usually talk in his sleep, so I was surprised to hear his voice. “Naomi!” he called again.

I peered into the bedroom. He was half asleep, looking up at me. “How are you feeling?” he asked.

“I’m OK, I don’t think I’m going to die. I’ll go to bed soon.”

He had taken me a little seriously after all. I went back to the living room, no longer feeling embarrassed or neglected. In a few minutes, I was sleepy.



“I’m so sorry for waking you up last night,” I said the next morning.

“It’s OK, sweetie, you were scared. It was understandable.”

“But you didn’t sleep enough and now you’re tired.”

“That’s OK, we’ll have a relaxed Sunday,” he said.

And we did.

Sunday, October 19, 2008

MR BUSTER, PART 3

This story starts with the post on 10/16/2008

A few weeks later, my parents were out of town. Mr. Buster had no TV (a further sign that deep down, he was an intellectual), so I invited him to our house to watch a movie. About a half an hour into it, he put his arm around my shoulders, and I moved closer to him. Soon enough we were kissing. I never saw the end of the movie.

The next few days were wonderful. Physical contact had been established, and I was elated. Of course it was great to be having sex again (perhaps the one thing the illness hadn’t interfered with was, quite strangely, my sex drive), but more than that, I was thrilled that a guy was interested in me. After Alejandro and I had broken up, I had assumed that my love life was over for the duration of my illness.

What guy would want to date someone who could barely stand up, who lived with her parents, and didn’t have a job? To realize that men, or at least one man, still found me attractive, despite all that—well, it made me feel completely different about myself.

Of course, the intellectual connection I was hoping for had yet to materialize, but that didn’t matter. I still clung to my assumption that still waters ran deep, and his true inner complexity would show itself in time.

And if part of me was starting to suspect that this complexity might just not be there, I wasn’t too concerned. When he mentioned that in a few months, USAID would be sending him to Nepal and he would be there for several years, my reaction, to myself at least, was “Perfect!” He didn’t have to be my soul mate, he could just be fun for a few months.

Besides, dating someone for a short time seemed more realistic, given my circumstances, than embarking on something that had more potential, with all the accompanying hopes and fears.

“This is all that I can ask for,” I thought, “I can have fun for now and maybe even distract myself from being sick for a few months.”

The problem was, Mr. Buster felt differently, as I quickly discovered.

That first night, after the movie, we stayed up talking. He asked me about my illness, and I explained to him what I knew. I had chronic fatigue syndrome, although the illness wasn’t very well understood. There was some problem with my immune system, and also my adrenal glands, which regulate the body’s energy. I seemed also to have food allergies, or at least if I avoided certain foods I felt less tired. He listened sympathetically.

The second night, when I went to his house, he asked me about my illness. What doctors was I going to, and why hadn’t I gone to John’s Hopkins and the Mayo Clinic?

I explained to him that I had been to John’s Hopkins already, and the person I saw seemed as confused as I was. I told him about all the other doctors I had seen, all twenty of them, all without a solution. With each new doctor my hopes had soared and then crashed. Some had tried things that made me worse, and I had ended up in bed for weeks, aching all over and crying from how exhausted I was.

Now, I explained, I was going to an acupuncturist, and I was making progress, even though it was slow. I was taking a drawing class and doing a little volunteering, which was much more than I had done before, so I was happy stick with acupuncture. Mr. Buster listened to all this, quite sympathetically, and he seemed to understand.

The next time I saw Mr. Buster, he asked me why I didn’t go the Mayo Clinic, or at least back to John’s Hopkins, and also why I didn’t go see a psychiatrist?

When I asked him why on earth he thought I should go to a psychiatrist, he told me his mother, who had been a doctor in Sri Lanka and was now a physician’s assistant in this country, had told him that chronic fatigue syndrome was a psychosomatic illness. In other words, it was all in my head.

I explained to Mr. Buster that I didn’t need to go to a psychiatrist. I wasn’t making this up. If it was all in my head, then wouldn’t the cure be all in my head? If I believed a doctor could cure me (as I had with each new doctor) then wouldn’t going to a doctor and taking medicine cure me? Besides, I had seen a therapist for a couple years, and she had always been clear that my illness was not psychological. Therapy had helped me learn how to cope with being ill, but had done nothing to cure my illness.

Mr. Buster listened to all this, quite sympathetically. He seemed to understand.

The next time I saw him, he had some information—a few pages from a medical reference book, which his brother, a doctor, had given him. (It turned out his family was crawling with doctors.) The entry was on chronic fatigue syndrome, and while it asserted that the illness was indeed a medical condition, not a psychiatric one, it shed not a photon of light on my dark problems. It merely listed the symptoms of cfs, and stated that ten percent of sufferers recovered. Ten percent? I didn’t need to read that. I really didn’t.

“Oh, don’t worry, of course you’re in that ten percent,” Mr. Buster said.

And what did the article recommend to achieve recovery? Resting, stretching, gradual increase of gentle exercise. Well, that was good. I already did the first two, as for the last, it got me nowhere except miserable, aching, and in bed. I had learned, instead, how to move around as little as possible: to brush my teeth and take a shower sitting down, to sit on a stool when I did anything at the kitchen counter, and to park myself on the sofa, sewing in hand, or at the kitchen table with a sketch book, and see how long I could go without getting up.

It was not in my nature to do this—I had been a rugby player, a scrappy news reporter and a traveler. Now, however, my energetic spirit got me into trouble. Too much movement, however small, exhausted me within minutes, and the next few hours, or even the rest of the day, would be ruined.

Mr. Buster listened to all this, and seemed to understand, but of course he understood nothing. Or at least, none of it was sinking in. He came to his own conclusions, based primarily on his mother’s mentioning that my illness was psychological and his brother’s scrap of paper that stated exercise would lead to a cure. I could talk myself blue, or purple even, but he would not see things from my point of view.

This is not to say that Mr. Buster didn’t care about me. On the contrary, he was giving every sign of falling for me. If he had cared less, things probably would have been easier. Because he cared, he wanted me better, and he wasn’t going to accept that wishy-washy acupuncture would do it.

All these conversations had taken place while other things were going on. We cooked dinner together, and talked about politics, and the impending war. I started to spend some nights at his house. We walked the dogs and he helped me train Kramer to come when she was called, which until then she had always considered optional.

Throughout it all, he kept returning to the one topic that was becoming an obsession for him: my health. I thought I would have a few months’ distraction from being sick, but it was turning out to be the opposite.

The strange thing is that even as I write this now, I realize Mr. Buster was right on some points. Acupuncture wasn’t curing me, and I was deluding myself that it was. I had gotten better at marshalling out my energy, and this allowed me to take up drawing, in a limited fashion, and to do some volunteer writing for the Chesapeake Bay Foundation, again in an extremely limited capacity. I had also learned how not to feel my absolute worst, not by doing anything that was in any shape or form a cure, but by avoiding the activity that brought on those symptoms. All this I lumped together and took as signs of progress. The truth was they weren’t.

Mr. Buster, with his fresh, outsider’s perspective, saw what I could not: that I wasn’t doing enough to get better. In his own, misguided way, he was pushing me to do more.

And of course, he was also extremely wrong. If he had truly listened to all my explanations, he would have understood that I was seriously ill, with something that couldn’t be wished away with a positive attitude, anti-depressants or more exercise, not any more than it could be overcome by acupuncture and two hours of meditation a day. We were both deluding ourselves, only our delusions were at odds with each other.

“You seem to have energy for what you want to have energy for,” he said to me once, when we lying in bed after particularly nice sex.

“What?” I said. I couldn’t believe what I was hearing.

“You had a lot of energy just then,” he said. “It seems like you have energy for what you want to do.”

I didn’t know whether to cry or to scream. “Energy for what I want to do??
Lying on my back and wriggling around a bit doesn’t take much energy,” I shot back. “What I want to do is walk down the street! What I want to do is get a job, move out of my parents’ house, go running!!!” There were tears in my eyes and I’m sure he could hear the fury in my voice. I didn’t wait for an answer. I got up, dressed, and left, driving the four blocks back home.

He called me soon after to apologize. It was heartfelt and convincing, but our days together were coming quickly to an end. He never gave up trying to encourage me to be more active, and stuck with the idea that a psychiatrist would cure me. “You’re probably just depressed,” he would say.

My allergy to the forced air heating in his house kicked in. He changed the filter, but it made little difference, I couldn’t spend the night there, and my parents’ house, of course, was out.

At one point he had seen me reading my beloved P.G. Wodehouse and he became very excited. His grandfather had loved Wodehouse, and had read some of his books to him as a little boy. I suggested I read to him sometime, and he liked the idea.

The next time we were lying in bed together, I pulled out Laughing Gas and started reading it to him. After about half a page he interrupted.

“I’m bored,” he said.

At that point, I truly gave up on Mr. Buster’s hidden intellect. It just wasn’t there. When it came down to it, we had very little in common: we were both dog owners, and we were former rugby players. My rugby captain Amanda had once said that women rugby players and men rugby players should have as little to do with each other as possible. I was beginning to think she had a point.

I left my Wodehouse book at Mr. Buster’s. When it was coming due at the library I called him to ask if he could bring it with him next time he and Buster went to the park.

“Do you want me to bring your other things as well?” he asked.

Just a few days before he had been asking me if I would go with him to Nepal, or at least visit him while he was there. So I don’t think breaking up was what he wanted. Offering to bring my things was more of a defensive move—the old pre-emptive strike. But a pre-emptive strike can bring about just what you are trying to avoid.

I hadn’t planned on ending it just then. I really only wanted to return my library books. I'd figured I would wait until things had deteriorated completely before I ended it, but what was the point? In my heart I was looking forward to being on my own again, so that I wouldn’t have to feel so bad about being sick.

“Yes,” I said, “You might as well.”

Friday, October 17, 2008

MR. BUSTER, CONTINUED

This story starts with the post on 10/16/2008.

After that first meeting in the park, I entered into the second phase of my relationship with Mr. Buster: the chase. My plan was to be in the park at the same time as Mr. Buster as often as I could. At first I tried going back to the same bench at the same time of day as when we first met, but with no results. Given that the time of day was 4pm, and Mr. Buster had a job, this wasn’t surprising.

The time I knew he was in the park, 6am, was out of the question, so I next tried the after-dinner hour, soon followed by the 5 o’clock time slot. This last was a rough time of day, when snarling alpha dogs competed in a sort of slam-dance, giving the park an atmosphere something between a mosh pit and a barroom brawl.

Kramer, who was a timid dog, was relieved when we stopped frequenting that scene. Since the Busters seemed to have no regular hour besides the early morning, I took to looking longingly at the park each time I was near a window, scanning the green for Buster’s black shape, or the tall, narrow one of his owner. I was prepared to grab the leash and run out the park with Kramer at any instant.

I knew it was a cliché, and I reveled in it. So much more fun to be the boy-crazy girl, waiting in the school hallway with a stack of books at the ready, than to be the chronically ill cousin, moping in a dark corner, coughing beneath a shawl and counting on her mother to arrange her marriage to Mr. Darcy, even though everyone knows he will never marry her!!

And then, by a stroke of luck, my mother tore her calf at the same time my father was out of town. I bravely volunteered to walk Kramer at the 6am time slot. This was tantamount to a Kamakaze mission. Although I was often awake at 6, my energy was close to zero at that time of day. I usually meditated for an hour right after breakfast, just to feel OK. Not to mention that I had to brush my teeth and take my shower sitting down.

Looking back now, it seems a testament to just how boring my life was that I saw the need for me to walk Kramer as such a golden opportunity. Once I had seen Mr. Buster again, and spoken with him, it didn’t matter to me that I spent the rest of the day lying on my back on the living room floor, a yoga mat beneath me and my legs propped up on the sofa, hoping this inversion and hours of deep breathing would work a miracle against the aching and fatigue that had taken over my body.

It also didn’t seem to matter that he wasn’t particularly witty, or insightful in his conversation. My goal was to talk to him, and I was reaching it. Besides, he was just a little shy and I was sure his conversation would blossom once he warmed up at little.

One thing was sure: he seemed eager to talk to me, and always crossed over to my side of the group of dog walkers, whether Kramer and Buster were playing together or not.

Within a few days I had a sort of back-handed invitation to see a movie with him, and a request for my email. I was thrilled. I told all my friends, who had been receiving regular updates on the Buster saga.

“Watch, he’ll probably pick me up in an S.U.V.” I laughed.

He did.

“Well, this is the first and last date,” I thought to myself while climbing into the monstrosity. Having lost all interest in staying in his good graces, I decided I might as well leverage some social pressure against him.

“What’s with this car? Don’t you care about global warming at all?” I chided him, trying to keep the tone playful. (My philosophy was that belligerence never won anyone over.)

He explained it was his brother’s car, on loan to him while his was in the shop. He normally drove a Subaru. We were back on.

Fortunately, there was no awkwardness about my being sick, since we ate at a restaurant right across the street from the movie theater. The only physical difficulty for me was standing in the lobby of the theater waiting to be let in to the movie, but this only lasted a few minutes, and since I spent the next hour and half sitting down, I had enough time to recover.

Still, it was not the most thrilling evening of my life. I didn’t really enjoy the movie, Eight Women, although the fact that Mr. Buster had picked an artistic French film was a further indication that beneath his reticent surface lay a sparkling intellect. Nevertheless, Mr. Buster’s conversational skills did not blossom has I had hoped for. He was shy, I was sure. I just had to draw him out and make him comfortable. I kept at it, and by the end of the night he was a little more talkative.

“This was fun,” he said. “Let’s do it again sometime.”

“OK,” I agreed, not really knowing why I was doing so. Was he as intriguing as he seemed? In the end, the outing had felt like hard work.

I told all my friends that when he called I would probably deflect him. We could remain casual, in-the-park-only friends. That was, whenever he called…. I was expecting him to call, any day, any time now….since he had said “let’s do this again,” and “this was fun,” I was sure he would call…. but he was taking his time about it, for sure, and then it seemed to be turning out that he wasn’t going to call….

And this annoyed me. Why wasn’t he calling? Wasn’t he interested in me? My mother’s calf had healed, so I had stopped taking Kramer to the park at 6am (with great relief, I might add, not to be abusing my already sick body). Had he just been counting on seeing me in the park and taken my absence as a sign of disinterest?

After about ten days I ran out of patience and sent him an email, saying we should get together with our dogs in the park sometime. He agreed.

Mr. Buster was turning out to be the sort of modern man who hedged his bets and took a casual, just-hanging-out-with-a-friend tactic to dating. It was an approach that historically I had little patience for: I had lived in Argentina and Mexico, where guys were either interested in you or they were not, and when they were they pursued you fervently. This always made things simpler.

But I was back in the States now, and things were different. Annoying, yes, but I didn’t give up so easily. The next few months things proceeded at a desultory pace. We went to a few movies, and met in the park with our dogs. I almost always made point of standing on these occasions, although it killed my legs and I would have preferred a bench. I was too embarrassed admit that I needed to sit.

Sometimes talking to him was like pulling teeth. At others, our conversation, although not scintillating, flowed easily. The dogs were a big topic of conversation, as was the looming war in Iraq, his work, and politics in general. Of course he knew I was ill, I had told him early on, in response to the inevitable question, “so, what do you do?” But I didn’t dwell on it, and he didn’t pry. Mostly, he didn’t seem to mind that I was sick, and this was a relief.

Fall became winter, and I invited him to my birthday party. As a present he brought me a headscarf from his recent trip to Pakistan. Over the past few months I had regaled all my friends with stories about running after him in the park, and although he wasn’t exactly my date for the night, I was excited for them to see how handsome he was. At one point in the evening, he put an affectionate arm around my shoulder.

To be continued….

Thursday, October 16, 2008

MR. BUSTER

While I was living with my parents, my mom spent a considerable amount of time in the park across the street from our house, walking our young dog, Kramer. At certain times of the day the number of dogs in the park would go from a smattering to a handful and then to a scene, with the owners congregating at one end of the park or another while the dogs ran in circles around them.

Kramer’s scene was the early morning one, and there my mother got to know many of the dog owners, but rarely by their names. Instead, she knew the names of the dogs, and when she talked about the owners she would call them “Mr. Spot,” or “Ms. Pigwidgeon,” and so on.


Nearly every morning my mother would recount for me what had happened in the park, and since it usually involved Kramer doing some utterly endearing doglike thing, I listened happily. But I seldom cared much about the human gossip that went along with the dog stories.

One day when we’d had Kramer for about a year, my mother came home from the park and told me, with a thrill in her voice, that there was a new dog owner—Mr. Buster. He was young and good looking, and single.

“Mom, I’m not interested,” I told her.

“But he’s so neat!” she said. “He’s from Sri-Lanka and he works at USAID….”

I still wasn’t interested. It was only a few months after my break up with Alejandro, and mentioning another man felt like rubbing salt into my raw wounds.

But even more than that, it seemed beyond consideration that anyone would want to date me while I was as sick as I was. I had stopped working several years before, and at twenty-nine I was living with my parents and dependent on them for more than just financial support. I needed them to cook and grocery shop for me, and even drive me places. My body was a dead weight almost every moment of the day, and the few glimmers when I felt—well, not close to energetic, but at least a little less sick—were so fleeting that I had learned not plan or hope for them anymore.

I didn’t even have the dignity of being able to tell people what was wrong with me, since my diagnosis had remained unclear. How was I supposed to meet someone under those circumstances?

No matter. If I wasn’t interested in Mr. Buster, my mother certainly was interested in him on my behalf. Every several days she came back from the park with some new bit of information about him: he had just bought a new house a few blocks from the far side of the park; he had got Buster from the pound; Buster was on a diet; Mr. Buster had four brothers, whom the Tamil Tigers had tried to recruit while they were living in Sri Lanka.

This last bit my mother learned from Mrs. Buster, Mr. Buster’s talkative mother who often walked the mile and a half from Ledroit Park to our neighborhood to take Buster out during the day. Mrs. Buster was slender and handsome and used an umbrella to keep cool in the summer heat. She took classes at the Smithsonian Institute and had been a doctor in Sri Lanka.

My mom was even more enthusiastic about Mrs. Buster than she was about her son, and as I write this now it I suppose she imagined what good friends the two of them would become once they were no longer mere Lincoln Park acquaintances, once their children were a couple.

At the time I was too engrossed in my own busted-heart to consider this. I didn’t want another man, and another man certainly didn’t want me.

Or so I thought, until one day in October, when I took Kramer to the park in the afternoon. My routine was to make it to the bench closest to our front door, then sit down, take Kramer off the leash and let her run around.

I had just done this when a large German Shepard mix ran up, followed by a tall, strikingly handsome man who knew Kramer by her name and called his own dog Buster.

He told me he had gotten Buster from the pound, that he worked at USAID and had just bought a house a few blocks away, and that Buster was on a diet. I pretended I was hearing all these things for the first time, but my interest was not feigned.

To start, his accent was intriguing. It was close to an Indian accent, without the sing-song lilt, but with almost plummy British overtones . His wire rimmed glasses added an intellectual air to his appearance, and did I mention that he was extremely good looking?

to be continued…

Wednesday, October 15, 2008

ABOUT LYME DISEASE


LYME DISEASE


Lyme disease is an infectious illness caused by the spirochete Borrelia burgordferi. (A spirochete is a slender bacteria that undulates in a spiral shape.) Symptoms of the disease range from fatigue and insomnia to joint pain, impaired mental function and even Bell’s palsey-like paralysis.


COMMON MISDIAGNOSIS

The Center for Disease Control reports that 7.9 per 100,000 people suffer from Lyme disease in the United States, although the actual number is probably much higher, since the illness is commonly misdiagnosed. My story, with four years of misdiagnosis and two and a half more years before I found proper treatment, is not unusual.

Many people also believe that Lyme disease is only found in New England, or at least only on the East Coast. This is not true. Lyme disease has been reported in 49 of the 50 states.


TICK BITES

Lyme disease is carried by deer, mice, or other small mammals, and spread to humans via ticks bites. It is possible that there are other, unknown means of transmission, since only fifty percent of Lyme sufferers remember receiving a tick bite.

A large, circular rash in a bull’s-eye pattern around the tick bite is a sign of Lyme disease, however absense of such a rash does not mean there is no Lyme infection. (I did not get a rash from my tick bite.)


TREATMENT

Lyme disease is treated with antibiotics. When caught early, a thirty day course of antibiotics usually brings about a successful cure. President George W. Bush was treated for Lyme disease this way, as was a friend of my family’s who was bitten by a tick in the same area where I was.
When the illness is misdiagnosed and becomes chronic, thirty days of antibiotics is usually not enough. Even if the patient recovers from short treatment, relapse is likely. A small but growing number of doctors have come to believe that longer courses of high-dose antibiotics are necessary. The treatment can last up to three years in some cases. These doctors report a 90 percent recovery rate in patients with chronic Lyme.


CONTROVERSY

There is an acrimonious controversy in the medical world over long-term antibiotics for Lyme disease. The group of doctors advocating and researching this treatment approach has its own association, ILADS (International Lyme and Associated Diseases Society) . The opposing camp, IDSA (Infectious Disease Society of America), dismisses the idea of chronic Lyme and does not recommend long-term antibiotics to treat Lyme. The dispute between these two groups and their allies is long and bitter, with most of the medical establishment and the insurance industry siding with IDSA, and patients with chronic Lyme siding with ILADS.

I am one such patient, and I would like to attest that after one year, having only partially completed my course of treatment, I am able to do much, much more than I could before I began the antibiotics. These are results that I simply could not obtain before going on antibiotics, despite a myriad of other treatments.

A fellow blogger, Joe, has written a first-hand account the failure of short-term antibiotics and the difficulty of encountering doctors who were skeptical or ignorant about a more effective treatment. You can read about what he went through here.

The controversy is truly unfortunate, not only becuause it prevents doctors from considering all treatment options, but also because it impedes medical investigation and discourages young researchers from going into the field.


FURTHER READING

An excellent book on the history of Lyme disease and the controversy surrounding it is Bull’s Eye by Jonathan A. Edlow.

SLEEP AT LAST

Sleep that knits up the ravelled sleave of care,/The death of each day's life...Chief nourisher in life's feast --William Shakespeare, Macbeth II,ii.

I spent the past few days not sleeping. This is a time consuming activity. When I don’t sleep I lie in bed, trying to sleep, listening to books on tape or letting my thoughts drift aimlessly, running through my relaxations techniques, and getting up every twenty minutes or so to take something—a little more Vitamin C, a homeopathic, some herbal drops—to see if it will allow me to drift off.

In my defense, when I’m not not sleeping, this method usually works. But when I’m not sleeping, this method takes up more and more time, Instead of getting up for the day at 8, I get up 9 or 9:30, feeling unrested. I eat breakfast and am so tired I decide it would be a good idea to have my morning nap early, so I get back in bed. Instead of sleeping for the usual 20-30 minutes and getting up again, I can easily spend an hour or more not sleeping and what with the not sleeping before breakfast, the entire morning is practically over by the time I’m done. The same goes for the afternoon nap…. and soon enough I’m in a state of extreme exhaustion and frustration.

So the day went yesterday. Aside from not sleeping, I managed to walk a couple blocks to the mailbox and make one short phone call by the time 5pm rolled around. In my defense I also meditated, but this is close enough to not sleeping it hardly counts as an activity. 5-6 I spent talking to the real estate agent and seeing that all my friends had emailed me to say they were too tired to go out tonight.

Everything around me was irritatingly familiar-- I had been at home spinning my wheels far to long. To make it worse, I’d told The Poet I would be out for the evening so he would have time to himself, and I was going to be damned if he found me at home moping instead.

“Fine, I’ll go for a walk alone just to get out,” I told myself. I didn’t want to walk on my regular routes through my neighborhood—I would get in the car and drive to Queene Anne and walk up the huge hill, something I hadn’t done before.

Tears welled up as I locked the apartment door and headed for my Honda.
“This is ridiculous,” I told myself. “Just because you’re along right now doesn’t mean you don’t have friends or people that love you.”

In a last wild hope I called Amelia. She hadn’t emailed me back, but might be home with her family for the night, and I could visit.

She picked up the phone. I could hear her five-year-old and her toddler, both screaming in the background.

“I’m having an extreme child-rearing moment,” she said. “Are you calling me because you want to go out tonight? Let’s go!”

She left her husband in charge of the kids, and half an hour later we were at the movie theater. We saw Ghost Town, which was good for a few laughs, and then went out for tea and kvetching and more laughs. When Amelia looked down at her watch and declared it was 10:45 I was surprised. Time had flown.

I also felt one hundred times better and had even forgotten about my insomnia for a little while. It’s amazing how such a simple thing can make such a big change.

I got home, took all my pills and gave myself what felt like a thousand injections, but was really only two.

I woke up at about 6 the next morning, when I usually do, and went to the kitchen to mix up the drink I always have at that time, with magnesium and amino acid powder, plus a handful of vitamins and supplements. I went back to bed. “If I can’t get back to sleep,” I told myself, “It doesn’t matter. I’ll get up and do stuff.”

I dreamt I went out swing dancing. I sat on a bench and watched, thinking I would jump in sooner or later. Seamus Heaney was there. He turned out to be a decent swing dancer and was dancing all the songs. I didn’t want him to see me, so I hung back. The music ended and it was time for me to take my chlorella. I went to a sink for water. As I mixed up the drink, Professor Heaney came up to me. He recognized me and chastised me gently for not writing. I knew it wasn’t my fault, but still I was chagrined.

“Look, I wrote your recommendation letter and it’s the best I’ve ever written,” he told me. As he talked, his Irish brogue became thicker, until his words were a deep, unintelligible rumble that rose and fell like waves. The next moment I was awake with a different poet, my boyfriend, snoring loudly beside me. I looked at the clock. It was 9:15. I didn’t care about Seamus Heaney anymore. I had, at last, slept all that I needed.

****************************


Post Script: Although it seemed at the time that going out with Amelia had cured my insomnia, the next day I realized that leaving home in a hurry and staying out fairly late, I put my heparin injection off until right before going to bed. That was what helped me to sleep so well. Since then, I have continued to do my heparin shot late at night and I have had not a drop of insomnia. Thanks to Amelia!

Sunday, October 12, 2008

HEPARIN

The first thing I felt when I went on Heparin three years ago was a warm, tingling feeling in my legs. Soon after that my body felt pleasantly heavy and my thoughts slowed to a drift. I felt sleepy, so went to my bed and took a nap. If you have Lyme, then you probably don’t take sleep for granted. For the past nine years I have fought tooth and nail for every inch of sleep I get, so to lie down and drift effortlessly into sleep was like the gentle rain of mercy falling down from heaven.

Within a few days of that first heparin dose, I noticed that my legs no longer ached when I walked or stood up. I tried a few short walks, just a block or two, and I was OK. If anything happened afterwards, it was only the heavy tingling washing over me until my energy returned. That is to say, for the first time in years my body actually recovered from walking. If I stood up for too long or walked a half block too far, I was no longer spending the rest of the day on the couch, my body a dead weight and my mind a little kaleidoscope of despair. I still got tired, but if I did, I rested and the rest did what it was supposed to.

And so started my love for Heparin. From the beginning, the good things were clear. One moment I remember in particular: I used to live on a street lined with picturesque bungalos, each with a pretty garden, and a view of the lake behind them. I used to drive by them on my way home, and think “One day, I will walk down this sidewalk and truly enjoy living on this street.”

After a couple weeks on the Heparin, I took that walk: three blocks out and back—unimaginable before then. As I turned to head home, I cried for joy.

And there was another benefit—the things that no longer happened and I didn’t miss at all. For example, before Heparin I went out with friends and acquaintances to a book reading. Afterwards, it was generally decided that we would all go get a drink at a cafĂ© a few blocks away. Only I couldn’t walk there. “I can’t go, I’ll wait here until M. comes to meet me,” I told my friend Ghusun, who was standing beside me.

Thank heaven for Ghusun: she promptly offered to drive me.

“Drive to Zaina? It’s three blocks away!” someone who didn’t know me exclaimed in disdain. I pretended not have heard, but I was cringing inside. “She’s sick,” someone else whispered. They all left on foot while I waited at the corner for Ghusun to get her car and pick me up, wishing all the while I could disappear.

I have not been in a situation like that in the past three years, and I hope never to be again.

But all loves have their give and take, and Heparin is not without its downside. Aside from the most obvious—having to give myself an injection every day—the big one is the bruising at the site of the injection.

The bruises were small at first, no bigger than a dime. But over time they accumulated and never entirely faded, so that my belly has a permanent gray-brown tinge. At one point, after a year of two injections per day, I had nowhere left to do the injection. I tried putting the needle into the fatty spot in my inner thigh, but it was too painful for me to bear.

So I switched to taking the Heparin sublingually. I filled the syringe, then squirted the medicine out under my tongue held it there for about ten minutes as it slowly absorbed through the membranes of my mouth. The effect of the medicine was dulled, and my legs started to shut down if I walked too far, but I could still go for short walks and do everything I needed to around the house, and the bruises on my stomach began to fade.

For the past year I have found this middle ground: one injection per day, one sublingual dose per day. I inched the sublingual dose up from 6,500 units to 6,700 units, with a go ahead from my doctor. My belly is still bruised and swollen. I wish I didn’t have this little pot belly, but Heparin trumps vanity.

In fact, Heparin trumps almost everything. I don’t want to imagine what my life would be like without it, as I have been reminded in many ways this week.

MONDAY

On Monday morning I called Key Pharmacy to get my Heparin prescription refilled. I had a handful of such calls to make that day, and I don’t like doing it. Key was last on my list, and I almost put it off, thinking there would be no harm in waiting a couple more days, my supplies would last.

“Come on, just do it now,” I told myself. “You’ll feel so much better having gotten all your calls over with.”

A few hours later I got a call back from the pharmacy. Debbie told me quite casually that there was a nationwide recall on the type of Heparin I have been using. There won’t be anymore for a few months at least, and did I want to put my name of a waiting list for when it gets in?

The other option, she told me, was Heparin with preservatives in it.

Um, no. I feel like I’m suffocating when I’m around someone wearing hairspray. My mind turns to mush for half a day if I eat food with additives. Injecting myself with preservatives? No thanks.

I hung up the phone and sat very still for a few minutes, quietly panicking. Then I called the Poet, at his day job in corporate software. As soon as I heard his low, rumbly voice I started feeling better.

“There’s no Heparin left!” I blurted out. “I’m going to go back to the way I was when you met me…. I don’t know how I’m going to get through my antibiotics.”

“Calm down, sweetie, it will be OK. I never heard of zat—za drug can’t disappear completely. Zere has to be Heparin somewhere. All you have to do is find it. You can order it from Canada like you did wis your oser medicine.”

A few words from the Poet were all it took. I was calm and resourceful again. And also I began to remember things—like I had once been on a brand name of Heparin called Lovenox. It was insanely expensive and tore through my meager insurance prescription coverage in a month—so I had switched to the generic I was on now.

I wrote down “Lovenox” in my notebook. This would be my last option, but if I had to, I could turn to high class prostitution to get it for a few months.

Then I called Carolyn, who suggested Rex Regulat, an over the counter enzyme that Dr. Dietrich Klinghardt uses and is similar to Heparin. While I was talking to Carolyn, I remembered that I used to have my prescription filled by a compounding pharmacy in Arizona, before Dr. Busher switched me to Key Pharmacy.

In a few more minutes I had found the Arizona company on the internet and was talking to Courtney in Scottsdale. She pulled my name up on the computer and told me they could get me preservative free Heparin. All she had to do was call Key Pharmacy and get my prescription transferred from them.

Halelujah!

The strangest thing about this illness is the way it vaporizes my time, as if making a few phone calls and looking one or two things up on the internet creates a wrinkle in the space-time continuum, and suddenly the afternoon is gone. Whenever anyone asks me how I spend my day I’m at a loss for what to say. “Oh, I take two naps a day and I also take a lot of medicine, and that uses up most of my time.” The usual response to that is a polite nod. They’re not getting it, I think to myself, and I don’t know how to explain it any better.

When I got off the phone with Courtney it was close to 5 and I was tired, but relieved. I had meant to spend the afternoon writing, but so it goes. It would be time for my Heparin injection soon.